The Big Hearted Echos Blog provides content in the following areas: News, science reviews, HCMA news, and perspectives.

From the desk of the Hcma ceo:

Salberg

Dear Lori

By Lisa
Posted in

Hello readers! I am sharing a letter I wrote to my sister on October 6, 2023 while sitting in a sesson at the Heart Failure Society of America annual scientific session held in Cleveland Ohio. I intended this letter as a way to talk to my sister who passed away in June 1995. For those…

In Her Own Words: Lisa Salberg advocates with a heart.

By Lisa
Posted in

My WHY – and OUR fight. Between 1 in 250 to 1 in 500 people are impacted by Hypertrophic Cardiomyopathy, a genetic heart condition that took the life of Lisa Salberg’s sister. Lisa, her daughter and many other family members live with this condition. That’s why she’s dedicated her life to advocacy. “Heart disease has…

HCMA/Nest Portal – HCMA Founder introduces you to a new way to get educated and stay engaged

By Lisa
Posted in

We were excited to announce on HCM Awareness Day 2023 our new partnership with Nest Genomics, a provider of services that helps educate patients to achieve the best outcomes in care and shared decision-making. As the HCMA grows, we must find new ways to provide personal attention and scale up to the larger community we…

A Man Called Otto

By Lisa
Posted in

A true MUST-see for the HCM Community. Today I should be calling my sister and signing… “when I’m 64”, but instead, I will remember the beautiful soul we lost when she was only 36. Yesterday I went to see the new movie “A Man called Otto”, in this movie, Tom Hanks character Otto has HCM.…

Responding to Sudden Cardiac Arrest: The Damar Hamlin teachable moment

By Lisa
Posted in

Commotio Cordis appears to have occurred at the Bill’s game, Monday, January 2, 2023, with the collapse of Damar Hamlin. If you don’t know what this is… sudden cardiac arrest occurs after a chest blow. While uncommon, it speaks to the need for AEDs on all playing fields. The HCMA shares in the hopes for…

The Audacity of Grief

By Lisa
Posted in

Can we talk about grief for a moment? We all experience loss, and each loss impacts us differently. There is no rule book for processing grief, and that’s a beautiful thing – processing grief is unique to the individual it happens to. Grief is defined as a specific type of suffering that is often tied…

The Mavacamten Marathon

By Lisa
Posted in

Camzyos™ Approval This is an exciting time for the HCM Community.  The FDA has approved Mavacamten under the brand name CAMZYOS, the first-in-class medication for symptomatic obstructive hypertrophic cardiomyopathy and the first drug developed specifically for HCM. Read the press release here CAMZYOS Patient Portal CAMZYOS Medication Guide CAMZYOS U.S. Prescribing Information CAMZYOSTM REMS (Risk Evaluation and Mitigation Strategy) Our…

Ever Wonder Who’s at the Center of Patient-Centered Care?  Look Again

By Lisa
Posted in

Of all the players in the healthcare system, patient advocacy organizations are often the most disadvantaged when a drug hits the market and they find themselves pitted against health providers, payers, pharmaceutical companies, and policymakers, all of whom want their piece of the financial pie.

Lori

The day that changed my life: June 12, 1995

By Lisa
Posted in

The day that changed my life was June 12, 1995, a Monday. The phone rang at 5:50am, which is never a good thing. I managed to roll over with my 8-month pregnant belly and answer the phone on the second ring. The voice was familiar but panicked it was my mother. “She is not breathing…

Lisa, age 12

Lisa, we have your heart. How soon can you be here?

By Lisa
Posted in

So there I was holding my heart in my hands while a new heartbeat was in my chest. Talk about surreal moments! The path that led to this moment encompasses 36 of my 48 years on this earth and in this one moment, I came face to face with the very thing that I had hated, feared, and loved… my heart.

HCMA Blog Roll

blog roll

July is about COE Care at the HCMA! 

By Sabrina Cuddy

Have you ever wondered what a Center of Excellence (COE) is? A COE is a dream team of specialists who work together to provide top-notch care to patients with specific diseases. They follow the best, most up-to-date practices. Many medical facilities strive to become a COE by forming a dedicated team that focuses on treating…

HCMA West Coast Tour

By Stacey Titus

Lisa Salberg, CEO and Founder, and I will host two Meet and Greets during our travel on the West Coast in July! La Jolla, CA, “Meet and Greet” on Thursday, July 18th,  at Olive & Basil from 6:00 – 8:00 PM PT.  Space is limited, so we ask all to register by July 16th for proper headcount and to ensure enough…

Volunteer!

By Julie Russo

The HCMA has many volunteer opportunities to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. FAQ: What is an HCMA Legislative State Champion? An amazing group of volunteers with A SHARED COMMITMENT TO FIND…

Volunteer!

By Julie Russo

The HCMA has many volunteer opportunities to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. FAQ: What is an HCMA Ambassador? What if every person with HCM had an accurate diagnosis, and access to…

The HCMA’s Focus for June is Staying Fit With HCM! 

By Sabrina Cuddy

There needs to be more clarity about exercise for HCM patients. Some doctors say, “don’t do anything physical,” and others say, “do whatever you want.” We can likely agree on one thing – they’re both wrong, and the best advice is somewhere in the middle. Experts agree that exercise is healthy for people with HCM.…

Swinging for a Cause: Golf Outings to Support HCMA

By Elena Morgan

Golf outings aren’t just about perfecting your swing or enjoying a sunny day on the course—they’re also a powerful tool for raising awareness and funds for the HCMA. The organization has benefited from many volunteer-led golf outings over the years. The longest standing is the  George Dooley Golf Outing, which has supported the HCMA while…

HCMA’s Lifesaving Engagement in the Local Community 

By Elena Morgan

On April 20th, HCMA spread awareness of HCM and sudden cardiac arrest (SCA) at the Denville Little League’s opening day ceremony, which attracted over 1,000 residents. At HCMA’s booth, Lisa Salberg, Elena Morgan, Adam Salberg, Lisa Vecchione, Kim Walsh, Arniella Santos, and John Titus, shared information about HCM and SCA preparedness, while promoting an upcoming…

In-Person Bighearted Warriors Unite featuring The Christ Hospital & Cincinnati Children’s

By Stacey Titus

The In-Person Bighearted Warriors Unite featuring The Christ Hospital & Cincinnati Children’s event held in Cincinnati, Ohio was a tremendous success, where we were pleased to see so many of you in person. The event commenced with a warm welcome address by Lisa Salberg. The day was focused on educating people about HCM, and it…

Volunteer!

By Julie Russo

The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. Are you interested in learning more about becoming a discussion group leader? Are you interested in making a difference through the legislative process at the state or federal levels? How about helping to spread awareness about HCM by…

Medical Management May

By Sabrina Cuddy

Medical Management means using medications and other non-invasive therapies to treat disease and relieve symptoms. It’s exciting and historic that new treatments targeted for HCM are being studied and that the FDA approved Camzyos in 2022!  HCM can cause various symptoms depending on how stiff the heart is, how much scarring (fibrosis) there is, and…

News - HCMA and HCM related news

1News

Swinging for a Cause: Golf Outings to Support HCMA

By Elena Morgan

Golf outings aren’t just about perfecting your swing or enjoying a sunny day on the course—they’re also a powerful tool for raising awareness and funds for the HCMA. The organization has benefited from many volunteer-led golf outings over the years. The longest standing is the  George Dooley Golf Outing, which has supported the HCMA while…

HCMA’s Lifesaving Engagement in the Local Community 

By Elena Morgan

On April 20th, HCMA spread awareness of HCM and sudden cardiac arrest (SCA) at the Denville Little League’s opening day ceremony, which attracted over 1,000 residents. At HCMA’s booth, Lisa Salberg, Elena Morgan, Adam Salberg, Lisa Vecchione, Kim Walsh, Arniella Santos, and John Titus, shared information about HCM and SCA preparedness, while promoting an upcoming…

HCMAs first Hill Day

By Linda Montgomery

Hill Day, February 15th, 2024 This year’s Hill Day Event during Heart Month was a success by all measures. It was our first year participating, and while it was a success, we’ve already come up with ideas on how to make it even better next year.  This is what the HCM Community does – make…

Beware of “Alternative” Funding Programs When Choosing your Health Plan

By Lisa

By: Lisa Salberg, Founder and CEO Hypertrophic Cardiomyopathy Association A new health insurance workaround could endanger the health of patients, particularly those with chronic illnesses like hypertrophic cardiomyopathy. This “new” concept is done in an attempt to cut costs for employers. This scheme is dubbed as the “alternative funding program.” In the context of hypertrophic…

ORCCA Study

By Olivia Esposito

The ORCCA study aims to prospectively monitor clinical outcomes in athletes with potentially life‐threatening cardiovascular conditions. The study will assess long‐term cardiovascular outcomes, psychosocial well‐being, and sports eligibility decision‐making in competitive athletes aged 18 to <35 years diagnosed with a cardiovascular condition or borderline finding with potential increased risk of major adverse cardiovascular events. Athletes must…

ODYSSEY nHCM (aka Hypertrophic Cardiomyopathy without obstruction)

By ross

We are looking for HCM patients without obstruction experiencing shortness of breath,  palpitations, tiring easily, and want to be in a clinical trial. In this trial, HCM non-obstructed patients will have the opportunity to participate in a myosin inhibitor trial,  which assesses the safety and efficacy of mavacamten in this population. Mavacamten is an investigational…

Septal myectomy and alcohol septal ablation: how safe and effective?

By Gordon Fox

Background A new meta-analysis (Yokohama et al. 2023) on the comparative success and safety of the two methods of septal reduction therapy – alcohol septal ablation (ASA; https://4hcm.org/alcohol-septal-ablation/) and septal myectomy (SM; https://4hcm.org/myectomy/) – was just published in European Journal of Cardio-thoracic Surgery. Methods Yujiro Yokoyama and colleagues conducted a meta-analysis of studies that compared…

Reasonable Accommodations

By Olivia Esposito

Through collaboration with Reasonable Accommodations LLC, the HCMA has expanded some of our COE directories. This expansion will make it easier to find travel information, places to eat, lodgings, etc. Only a handful of COE directories have been updated so far, in 2024 we plan on populating the rest.  You can check out the new…

George Dooley Memorial

By admin

It’s been 24 years – and we will never forget. Twenty-four years without my brother, George, who was also a son, husband, father, teacher, coach and so much more than the roles he played. George died at the young age of 41 from Hypertrophic Cardiomyopathy (HCM), leaving behind a wife, 2 small children, and family…

Medtronic ICD Recall

By Olivia Esposito

What is the recall: The FDA has issued a Class 1 recall of Medtronic ICDs and CRT-Ds, manufactured after 2017, with a glassed feedthrough. Who does it affect: This recall affects only the following Medtronic ICDs: Cobalt™ XT/Cobalt™/Crome™ ICDs and CRT-Ds, a subset of: Claria MRI™/Amplia MRI™/Compia MRI™/Viva™/Brava™ CRT-Ds, a subset of: Visia AF™/Visia AF MRI™/Evera™/Evera MRI™/Primo MRI™/Mirro MRI™…